Daniel and his family are active volunteers for the National Marfan Foundation, going above and beyond to raise awareness of Marfan syndrome and to raise funds for the NMF. In July of 2011, Daniel received the Foundation's Rising Star Award for his extraordinary efforts. His positive attitude in the face of living with a rare genetic disorder is an inspiration to us all. This presentation is his story in his own words.

1. Daniel S.
Age 13

2. Diagnosis
 Diagnosed with Marfan
Syndrome at age 7.
 Only one in my family
 Never heard of the
syndrome before
 Doctor checking my back
for scoliosis suggested that
I might have Marfan
syndrome
 Diagnosed by Genetics
Doctor
 Aortic Valve enlarged

3. My Features of Marfan Syndrome
 Heart affected
 Muscle tone and Skeletal
system affected
 Eyes are NOT affected

4. Clinical Trial
 3 year clinical trial at Johns Hopkins Hospital
 I was on one of two different types of drugs they are
studying for the treatment of Marfan Syndrome
 Finished trial 1 year ago
 Still under care at Johns Hopkins
 Take 2 medicines
 Losartan and atenolol
 Slow the effects of Marfan Syndrome on my aortic valve

5. Orthopedic
 Kyphosis – roundness of the spine
 See an orthopedic doctor once a year
 Kyphosis curve increased this year
 Wear back brace at night
 Straighten back
 Prevent need to have surgery

6. How I Felt About My Diagnosis
 When I was first
diagnosed…
 Angry
 Playing basketball
 Doing all things Marfan
patients not allowed to do
 Didn’t want to talk about
it
 Upset when people
commented on my height
and asked me why I wasn’t
playing basketball
 No military and career
choices limited

7. Helping NMF
 Wanted to raise money for
research
 Held different fundraisers
 Dog walk
 Heart and Soul Music
concert
 So far I have raised over
$8,000 for NMF
 Received the Rising Star
Award at annual NMF
conference in Oregon last
year

8. My Future
 BUT, not just about raising money, it is about raising
awareness and possibly saving a life.
 Changed my hobbies and focuses – tried new things
 Think of positive things I can do

9. Living My Life
 Still active
 Agility train and trial with
my golden retriever
 Swim
 Take walks
 Ride a bike
 Play piano
With good medical
care and a positive
outlook, I can live
successfully with
Marfan Syndrome.